Campaign Launched to Increase Understanding and Awareness of Idiopathic Hypersomnia

 A disease awareness campaign, I HAVE IH has been launched to increase understanding of idiopathic hypersomnia (IH). The campaign also has the objective to empower individuals to recognize symptoms and improve communication with their health care professionals.

More education and awareness of IH is needed because of the misdiagnosis and delays in diagnosis that can be as long as 10 to 15 years. Of 305 surveyed physicians, 92% agreed the negative effects of IH are underestimated and it deserves greater recognition among sleep disorders. With their patients’ perceptions in mind, 87% said individuals with IH are frustrated with the health care community and 95% are frustrated with their disease management.  Only 36% reported that they believe other healthcare providers have a sufficient understanding of IH. More than 90% stated physicians need more education about the sleep disorder.
 
Additionally, 87% of the physicians stated that diagnosing IH can be challenging and 57% reported they personally misdiagnosed IH as another condition. Also, 86% of physicians reported viduals with IH are often misdiagnosed with depression and anxiety.
 
“I’m happy to see that Jazz and the Hypersomnia Foundation are committed to this community and working to help physicians and patients, as well as their supporters, better understand this debilitating neurologic sleep disorder, with the aim of strengthening dialogues between patients and their doctors,” said Richard K. Bogan, MD, FCCP, FAASM, associate clinical professor at the University of South Carolina School of Medicine. “As a sleep specialist, the findings from this survey do not come as a shock. I am well aware that some specialties that often are the first to encounter IH patients don’t have enough awareness of the sleep disorder or the diagnosing process to accurately diagnose them, often causing missed diagnoses.”